Finding A Way Through: My Spinal CSF Leak Recovery

Our greatest glory is not in never falling, but in rising every time we fall.– Confucius

It’s been a while since I have written here. The last six months have been a season of deep trial and anguish, whilst simultaneously becoming a season of great joy. My ongoing health battles have been truly exhausting and yet…

I am currently seeing some light at the end of the tunnel.

And today, I have rediscovered my voice to share my story.

Following just about holding on through the immense challenges of the the last three years – since I fell off that ladder in January 2015 – I can now pretty confidently say that it seems that I am currently in recovery from my CSF leak. We are hoping that this time – following epidural blood patch number four last September – that I can make a full recovery.

At the moment it looks like we are heading that way. And yet my three year journey has been full of a cycle of injury, treatment, recovery and relapse. So it has been intensely difficult to definitely say to the world – “this is IT!”

Although that is of course the hope and dream.

Following my long summer of 2017 spent almost totally flat in bed(or on my beautiful garden bed outside) I had a CT Myelogram scan mid September to try and locate my spinal CSF leak. Traumatically, the scan caused me to have an epileptic seizure and yet failed to evidence my leak. Such is the challenge of looking for these elusive leaks – 50% of which are never actually found. I was subsequently then left even worse off than I had been – hardly able to walk or be upright for more than a few minutes at a time. So I stayed in hospital and a week later I had a 40ml lumbar epidural blood patch (after the first one was aborted due to the needle going too far). Two days later it appeared that my headaches had shifted from low to intense rebound high-pressure headaches and I was finally discharged with the diuretic acetazolomide to help these new headaches.

High pressure headaches point to the fact the blood patch has probably worked – however the journey of trying to discern what is high or low pressure is not for the faint of heart.

In fact – over the next few weeks – it again almost completely floored me.

Over the following couple of months I was extremely unwell, even though I could be upright much more. This took its toll on my mental health as I struggled to work out what on earth was going on in my crazy body. One day I was sure it was rebound high pressure symptoms and the blood patch had worked – the next I was convinced it was still low pressure and that the treatment hadn’t worked. Day by day, week by week, the confusion and debilitation of severe neurological symptoms and pain – both upright and lying flat – and an inability to rest and sleep properly – took its toll on my mental health. Until I realised – if nothing changed quickly – that I was heading towards a second complete mental breakdown. (Like the one I had had a couple of months after my second epidural blood patch in November 2015).

When suicidal thoughts began to again abound – as I again convinced myself that I was probably still leaking and would maybe never get well – I knew I had to take radical steps to calm my terrifyingly restless and anxious thoughts and again find a way through the anxiety and confusion.

“A person who worries still thinks in some way that he can solve his own problem. Worry is the mind racing around trying to find a solution to its situation” – Joyce Meyer

The darkness of hopelessness and despair began to wash over me like a flood – mixed with the sheer exhaustion of three years of fighting and partially recovering and then relapsing again and again – and I was slowly beginning to feel like I was drowning again mentally and emotionally.

My legs were madly trying to tread water to keep my head above the waters – but some moments of some days I felt far too worn out to keep battling to stay afloat.

But what choice did I really have – right?!

There is no choice – because the only other choice is the unthinkable… and yet in the darkness you DO think the unthinkable. In the silence of pain and debilitation – your mind can end up in a scary place.

You just need it all to go away…you just need the pain and struggle to end…

You even sometimes naively wish what you had was terminal – because at least then there would be an end.

There needs to be an end.
There has to be an end.

How do you keep going, when you don’t know how long you have to endure? It’s the not knowing that feeds the anxiety, it’s the fears of getting worse that drain your depleted energy… and yet there is no escape.

You just need an escape…

But then you become consumed with guilt and shame for being so selfish to not only think – but at times dwell on such horrible things. Because if I love my family then I have to endure – because love never gives up!Right!? Unconditional love endures till the end.

…And yet how do you keep on going when you are utterly exhausted and at the end of yourself.

It’s a vicious cycle.

I even shouted at God on a few occasions to make it all stop because I couldn’t take any more of it. I told Him I wasn’t strong enough to keep on fighting. I was utterly worn out in every way – I pleaded with Him for no more pain, no more medical battles, no more clear scans, no more chaos in our life, no more crazy debilitating symptoms!

Shame was pulling me back down into its dark clutches. In my mind shame taunted me with the fact I was too weak, the fact I couldn’t cope, the fact I was chronically ill and couldn’t get well, the fact I had seizured after the CT Myelogram – so thought no one would do any more scans like that now to try and find the leak. The fact that I thought soon enough Doctors would give up on my difficult case.

I heard a voice within me screaming; ‘You can’t do this! You might as well give up! You will never get well – your worthless life will be full of this kind of pain for good. It won’t get better. It will only again get worse. Relapse is inevitable – and you will only go and muck up any healing again anyway!!

I HAD to still those relentless voices.I HAD to rediscover the voice of hope.I HAD to somehow find a way to discipline my restless mind.I HAD to trust God for the strength to somehow make it through.

“If you hear a voice within you say, ‘you cannot paint,’ then by all means paint and that voice will be silenced.” – Vincent Van Gogh

I had to find the voice of faith, unconditional love and abundant grace.

That still small voice that is always whispering to my heart telling me: You CAN do this and I AM is here helping you through.

I couldn’t do it alone. I needed Him to walk me through. I needed Him to talk me through.

I needed His voice.I needed to draw closer to His heart to hear His whispers.His words became my breath of life.His truths lit up the path ahead.

Moment by momentDay by day
I somehow made it through…

Even when it seemed impossible.

“You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! Trust in the Lord always, for the Lord GOD is the eternal Rock.” -‭‭Isaiah‬ ‭26:3-4‬ ‬. The Bible.

Things began to settle down a bit a couple of months or so after my fourth blood patch and I began to discover that I could be upright more and walk further – little by little, week by week.

But I knew I had to protect any progress.
I needed to focus my mind and fix it on more hopeful things.
I knew I must use my thoughts to meditate on more calming concepts.

I had to shut down the multitude of voices that surrounded me and work on listening to the one I most needed.The voice that whispered, ‘be still’ in the midst of the raging storm. The only voice that had the power to break through the deep darkness that enveloped me, with the light of true abundant life. The voice singing songs of love over me – as He navigated my broken vessel through the raging seas.

And,…step by step……hour by hour…….day by day……week by week…

I am finding my way into more and more peaceful waters.

Physically, mentally, emotionally and spiritually – calmer times have come.

I am not yet ‘back to normal’ – back to where I was before I fell that day in January 2015. And yet, I can be upright ALL day long without needing to lie down. Week by week I am growing in confidence in what I can do. Month by month my strength is building and my body is in less pain and is more fully relaxing.

I still have issues in my head. My Neurology Consultant and I agree that it seems to be a ‘hypersensitivity to higher pressure’ – so I still need a lot of calm and quiet in my days. I cannot rush about like I used to. Stress, raising my voice, singing, talking too much, bending, lifting, going to the loo – and similar things – all increase the pressure in my head.

But it is improving … slowly … and it is gradually heading in the right direction.

So that I can hope, believe and dream again – that one day I will be fully free from this horrendously debilitating condition. Free from the monster that has plagued the last three years of my life and attempted to rob far too much from our family. I still have to fight the fears of relapse – because that has been my very real experience so very many times.

But I HAVE learnt so much on this crazy recovery story – and those around me have learnt so much too.

Doctors are learning how better to treat this condition – because I chose to open up my life and to keep them informed. Patients are learning how to find a way through – because I chose to speak up, challenge misguided opinions about the condition and reach out amidst my pain. Christians are finding a way to endure seasons of great suffering – because by His grace I have somehow managed to wrestle through.

And one day – one fine and beautiful day to come – I hope that I can fully enjoy and embrace the wonder of hindsight.That in a time hopefully coming soon – I can stand on the mountain top and tell the world that I managed to just about endure and somehow made it through the pain. I have always known that that will be a glorious season – where I will shout, sing and share the tales of complete restoration and stunning redemption from the intense struggle. Where I can testify to how God brought our family all the way through.

But in the meantime…

….whilst things are still a little hazy and complete recovery is a dream not yet fully attained… I want to tell you of my gratitude.For life, love and breath in my lungs. For my amazing husband, my enduring children, my loving family, dear friends and wonderfully supportive church. I want to tell you about all the wonderful doctors and nurses that have helped me through – even when their understanding was so limited. I want to speak of my gratitude that I can currently be upright ALL day, that I can walk for miles whilst listening to music or inspiring words. That I can drive locally, go to the shops, visit friends, eat in a cafe and sit up in church.

I need to tell you that when you have tasted of utter debilitation, that being able to DO things again is a wonder to behold.

However, most of all I need to tell you about the fundamental thing that has brought me through.

He is known as Jehovah – the stunning three in one God – who so very many people don’t yet know. He is my light in the darkness. He is unconditional love in the midst of trial and sorrow. He is my undeserved grace when I completely fall apart and shout at Him in anger and despair. He is my comforter when I am distressed. He is the still small voice that sustains me. He is peace to my anxious thoughts. My fountain of life. My inner calm.

He is the way, the truth and the life.

But most of all I need to tell you that in and through His stunning grace – He carried me – on the days I never thought I would make it through. Sometimes through my husband, children, family and friends. Sometimes through a song or inspiring words that someone chose to share. Sometimes through the prayer offered up by someone who saw our pain. Sometimes through a whisper on the wind picked up when my heart and mind were finally still.

So I will ALWAYS hold fast to Him and listen to His songs of love – until that day comes when this beautiful scripture becomes my physical – as well as – my spiritual reality.

“My beloved spoke and said to me, “Arise, my darling, my beautiful one, come with me. See! The winter is past; the rains are over and gone. Flowers appear on the earth; the season of singing has come…” – Song of Songs 2:10-12. The Bible.

My dream is that one day I will sing again – with all the breath in my lungs – without it hurting my head.

And on that day I will sing a new song of never ending love from my soul, to the ONE who carries us through our deepest, darkest pain.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching.

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

my dear friend Becky, my heart breaks for your struggles but heals with you knowing your love and faith in our Father. Thank you for letting me know where you are today. God bless my dear girl, praying for your healing. Renewed in spring with a season of singing. xx

Wow! It’s hard to know what to say to this!
Again as I’ve always said, you’re ‘one of the most inspirational people I know’ – and I thought that before this leak!!
It’s actually not really a surprise that with your evangelistic desire and abilities, someone wants you out of the fight… but the battle is not his 😊 If God is for us then who can stand against right?
Love you Becky
Jane x

Hi Cynthia, it’s now 7 1/2 months since the blood patch – I still have a lot of higher pressure symptoms and hypersensitivity to even small increases in ICP (intracranial pressure). But week by week it seems to all gradually improve and I can do/ achieve more. It is a frustratingly slow process unfortunately. But this is probably the best I have been in nearly 3 1/2 years. So it is promising at least!

Thank you for your kind words Linda!! Yes I agree with that prayer – may we all find long term FULL healing!! It’s sooo VERY VERY hard to endure… even recovery is a marathon. But this is the best I have been in 3 years so just thankful to be on the up still!!

Thank you for sharing!
I have been battling a very similar battle with my CSF leak. 4 blood patches now and rebound high pressure too. The anxiety is awful but your words are inspiring and encouraging. I realize I need to work on my faith right now to help me fully heal.

It sure is a brutal and desolate journey Alison and rebound high pressure can take a very long time to settle. 10 months since my 4th patch I am doing so much better – but a hypersensitive head/ rebound high pressure symptoms are still a big problem for me. But thankfully each week and month they ease and are less prominent, so I can do more. My faith has been my constant rock throughout this journey and continues to be as my physical health is still not back to normal’

… sorry pressed to post too soon!! So I send you empathy and hope for full long term healing for us all!! And to never revisit the nightmare that the CSF leak journey is!! Sending love and prayers, Becky x

Thank you so much for writing this article. It has brought me so much comfort in a difficult time. Just had my second patch on Thursday and now the high pressure is almost as unbearable as the low pressure. The anxiety about the future is debilitating. Thank you for spreading hope. ❤️

Hi Paula, I am so glad that it brought you comfort and hope. Low and high pressure headaches are both unbearable – in similar and totally different ways. I am publishing an update post on my year of recovery next Saturday which will be exactly a year since my patch. In many ways I am doing exceedingly well – been upright all day everyday since mid December 2017. But I still do have some higher pressure/ hypersensitive symptoms. But this is the best I have felt since my initial accident and the onset of the leak in January 2015. So keep holding on. It does get easier – but the road is not easy and much like a rollercoaster especially for the first few weeks after the patch. Sending empathy and love x

Becky, I also have a CSF leak at my T12, this has been going on for a year, getting 2nd patch Oct 5, at Duke, with Dr Gray, God blessed me with a wonderful, compassionate dr. I have always considered my self a tough woman, but this has tried to prove me wrong, but my heavenly father, has given me the strength to fight. My help comes from the Lord! Im not angry, upset or depressed this time, Im at peace, Gods got a plan for all of us. Thank you so much for sharing your story, I was starting to think I was the only one. I have been looking for someone like you to share your story for 6 months, God placed you in my life, to give me hope! God bless

Dear Gwen, I am so sorry you have had to face the awful battle that living with a CSF Leak and seeking treatment brings. It is amazing how even the ‘toughest’ of us can be reduced to incredibly broken by the ordeal… and yet God does and will use it in our lives. I am so glad you have a compassionate Dr – that is so very important and gives us so much more strength for the fight. I pray and hope so much that your second patch works and holds for you. And I pray for strength to face the endurance test that recovery also brings. Sending you love and empathy as you keep fighting. Becky x